This is a blog I've started to help me deal with the diagnosis of having gastroparesis. It was suggested to me that a blog/diary might help me feel better by venting my frustrations and struggles. Also, I hope I can help others who may have the same thing through my own experiences.
For more information, please email: emilysstomach[at]gmail.com or follow on Twitter: www.twitter.com/emilysstomach or like us on Facebook: http://www.facebook.com/emilysstomach

Sunday, April 19, 2015

I have talked to a lot of GPers (people with Gastroparesis) and they have told me at one time or another, that they were accused of having an eating disorder and was refused treatment. In high school, when I was sick and before I knew what I had, I was accused of pregnancy and then an eating disorder. Some people did get gastroparesis through eating disorders as well. However, I do not think they should be punished nor should we all be punished and refused treatment because of this terrible invisible chronic illness. I am going to share some stories with you that brave women have sent me. Because, they deserve to be heard and the world needs to hear them. They won't be invisible anymore.

Meghan writes,

"Hi my name's Meghan. I'm a member of the Gastroparesis Support Group (https://www.facebook.com/groups/GastroparesisSupportGroup) on Facebook. I'm interested in helping with a blog article on GP caused by an eating disorder. I had severe anorexia and bulimia for 15 years. I just got a pacemaker for the GP because the damage done is bad. I was hospitalized 10 times for my ED. My lowest weight has 76 lbs. I developed the GP about 6 years into it and had a bad experience with a GI doc who didn't believe me. My ED morphed. I was purging not because I was scared of gaining weight (I wanted to gain weight!) But the food sitting undigested in my stomach made me feel so sick. So I either wouldn't eat at all to avoid the nausea or when I got starving I would binge and purge. I'm 95lbs now. I'm not mentally in an eating disorder anymore. But the GP symptoms make me scared to eat a lot of the time. I also need partial dentures from the vomiting. I am 32.

I saw your post on the gastroparesis support group on Facebook on the difference between eating disorders and gp. I think I told you a little bit of my story, about how my severe eating disorder caused my gp. The biggest difference for me is that one (the ED) is a battle with the mind and that the other (the GP) is a battle with the body. With an eating disorder I had urges, mental urges, to restrict my food or binge and purge for emotional reasons. With GP the battle is more physical - there is nausea and pain, confusion with being both hungry and full at the same time. But there ARE still emotions connected to GP, like anger and resentment at your body. ('Damnit i love pizza and it's going to cause me to throw up but I'm going to eat it anyway it's not fair I hate this!') The problem I have is drawing the line with that. I can make myself vomit very easily just by clenching my stomach from my years of binging and purging. If i have stomach pain from the GP and know if I make myself vomit I will feel better, do I do it? The emotions attached to our food and body is hard to deal with."

"Eating disorders -- such as anorexia, bulimia, and binge eating disorder – include extreme emotions, attitudes, and behaviors surrounding weight and food issues. Eating disorders are serious emotional and physical problems that can have life-threatening consequences for females and males."

"Gastroparesis is a condition in which the spontaneous movement of the muscles (motility) in your stomach does not function normally."

This is a story from Madison, who writes,

"I was bullied all throughout middle school, because I became friends with a girl who did drugs. She would constantly criticize what I ate, and would throw away my food, and we would go to her house so we could look at pro-ana [sic: anorexia] sites. After she got kicked out of school for using drugs, I didn't really have many friends. I was so in my head all the time and just so focused on my eating disorder. It just continued to get worse and worse until my school forced my parents to take me out of school to get a physical because I became a liability to them. Going to high school was even worse.

I would have panic attacks every day and miss probably half the week. I WAS so tired all the time that I couldn't do my homework, couldn't Do my classwork, nothing. I was too malnourished. In 10th grade halfway through I dropped out and did independent study, which I excelled in.

I abused amphetamines, which made me lose weight faster, and would spend all day at the library so I didn't have to eat. Junior year I decided to go back to school but within the first week the panic attacks started again. I had to go back to independent study.

I got into some legal trouble and my therapist told me that to avoid legal consequences, and dying, I should go to treatment. She was on the phone with my parents forever on a Wednesday and by that friday I was in an Inpatient treatment center. They discharged me at 5 weeks, and going to outpatient was too much for me. I wasn't ready to leave.

I started purging to get back into residential. They let me back in for another two weeks which really did a lot for me to break my behaviours. I successfully completed 6 months of treatment. But, I had awful nausea, dizziness, abdominal pain, and many other GI symptoms.

I turned 18, graduated from high school, and went to college to study psychology. The GI symptoms got worse and worse. I wasn't getting any emotional support. I was still depressed and still incredibly anxious and still wanting to die. Every day. I got a puppy who made me so so happy, and the only reason why I'm still here today. February 2014 I was hospitalized and bunches of tests were ran. It was gastroparesis, cause by my eating disorder. I also have osteopenia from malnutrition. I have fibromyalgia. Every day is a struggle."

I want to applaud these women for coming forward with their stories. We are all accused at one time or another of having an eating disorder so we are overlooked and undertreated. Eating disorders can be just as deadly as gastroparesis, but they are both invisible, chronic illnesses so people assume we make them up for attention. I can tell you that some of my family thinks that my illness is in my head. They think I have bad anxiety and that I have made up this illness for attention, despite tests saying otherwise. I know how it feels to be looked down on and not taken seriously by doctors, family, friends, anyone. That's why I wanted to share these women's struggles and their stories. I'd like to share more.

If you would like to share your story as well, I'd be glad to add it to this article. Please send your story to me at emilysstomach[at]gmail.com. Please let me know if I have permission to use your name or if you want me to change it. I have used real names in this article because I was allowed to. If you have any questions for the ladies above, please ask them on my wall on my Facebook page: www.facebook.com/emilysstomach and I'll see that they get your messages.

They are very brave to come forward for their stories for this article. It doesn't matter how they got GP, what does matter is that they HAVE GP and we are all in this together! No awareness, no research, no cure.

EDIT: If you are looking for help or for others like you, I've created a group to help everyone with their feelings: https://www.facebook.com/groups/GPandEDSupport/ I just wanted some place where we wouldn't judge each other and where we could talk about the things that are bothering us that no one else really understands.